Communicating with the Care Team During End-of-Life Care

Episode 10: Communicating with the Care Team During End-of-Life Care

When a child’s condition changes or they are nearing the end of life, caregivers face hard choices. It can help to focus on comfort, quality of life, and what matters most to the child.

In this episode, Tekeima Townsend‑Billups talks with parents Tasha and Dean Ives about caring for their daughter, Sydney, in her final months of life. They describe how their advocacy changed as Sydney’s health declined. They share what “quality of life” meant for their family, how they talked honestly with their children, and how they made day‑to‑day decisions based on Sydney’s well-being and wishes.

Mike McNeil shares guidance on communicating with the care team during this time. He explains shared decision‑making and how trust supports better end‑of‑life care. He encourages caregivers to name their hopes and worries and to ask for the help they need.

A special thank you to our host Tekeima Townsend‑Billups, senior staff chaplain at St. Jude; our expert Mike McNeil, pediatric oncologist and palliative care physician at St. Jude; and our guests Tasha and Dean Ives.

This episode was recorded on December 5, 2025.

Learn more about palliative care on St. Jude Care & Treatment and Together by St. Jude™.

Listen to Tasha and Dean discuss communicating with the care team during treatment.

St. Jude does not endorse any branded product or organization mentioned in this podcast.

Episode Transcript

Narrator (00:02) 
A child's diagnosis of cancer or another serious disease is difficult. Families, guardians, and loved ones experience a range of emotions and often need support related to their child's diagnosis and treatment. St. Jude Children's Research Hospital brings you Caregivers SHARE, a St. Jude podcast. Share stands for support, honor, advise, reflect, encourage. In this series, you'll hear stories and insights directly from the experiences of St. Jude families and care providers. 

Tekeima Townsend‑Billups (00:37) 
Advocating for your child during end‑of‑life care, a change in their condition, or while managing a chronic illness can be challenging. Older children may be able to share their wishes, but younger children or those who are very ill may not be able to express what they want or what they deeply desire. 

In this tender season, a caregiver's voice emerges as something sacred, where a child's wishes, values, and comforts find expression. Some families feel most supported in the hospital, while others prefer the comfort of home. Some continue to search for ways to extend life, while others prioritize the quality of the time they have. There is no one right way. 

There is only love showing up in many forms, and at the heart of every path, the same hope that a child may live the best and fullest life possible. 

I'm Tekeima Townsend-Billups, Senior Staff Chaplain at St. Jude Children's Research Hospital. In this episode of Caregivers SHARE, we continue our conversation with caregivers Tasha and Dean Ives about advocating for your child and for yourself. 

In this episode, we welcome subject matter expert Mike McNeil, who joins us to contribute to this delicate discussion on communicating with the care team as a child nears the end of life. 

Mike, will you please introduce yourself? 

Mike McNeil (02:13) 
Yeah, it's a pleasure being here. My name is Mike McNeil. I'm a pediatric oncologist and palliative care physician here at St. Jude Children's Research Hospital and lead our St. Jude Global Palliative Care Program. 

Tekeima (02:26) 
Thank you, Mike. Tasha and Dean, please introduce yourselves and tell us a little more about your journey. 

Tasha Ives (02:33) 
I'm Tasha Ives. I am the mother of Sydney Ives, who passed away in 2009 from an inoperable brain tumor. We have an awesome son, Carson, who's married to Lindsey, and we just have a beautiful family in the Nashville area.

And we are just thankful to be here and to contribute to the conversation.

Dean Ives (02:56) 
My name is Dean Ives. I'm Sydney's dad and Carson's dad as well, but I always enjoy the time to discuss our journey and our season through Sydney's cancer and her passing. So, love this opportunity. Just thankful to be here.

Tekeima (03:15) 
Thank you so much for opening your hearts to us once again. You welcome us on the journey with such incredible grace.

You shared so beautifully in the last episode about your experiences advocating for Sydney. As her condition changed, it seems that advocacy took on new layers. What did quality of life mean for you when caring for Sydney during that time?

Tasha (03:42) 
I don't know if we really knew what quality of life meant when that first became a subject matter. I had some experience with losing loved ones who had been on hospice care. But as far as what that meant for my own child, that was sort of an ongoing process of learning, taking each day as it came.

But I do believe that once we realized that the protocol we were on was no longer keeping her tumor at bay… She was never curative, as she was terminal at diagnosis. But that particular protocol was no longer doing its job.

One of those options was to go home on hospice care at that time. And I think for us, having a conversation with Sydney regarding that. A phase 1 trial was introduced to us as an option, and our doctors were very honest about that not curing her.

So we had that conversation with her and she wanted to be home with our family. She was 10 at the time and she just wanted to be home surrounded by family.

So I think we learned initially that that meant we would keep her as comfortable as possible for as long as possible, to be able to do as much as possible for however long we had her.

Dean (05:21) 
I think if you heard the first episode, it's just Tasha was basically having to educate herself as well as me as she walked through this journey. I typically was just that person that just heard quality of life or hospice or anything like that and just really didn't know a lot about it.

And so it was just kind of that piece that Tasha would explain it to me. And I, again, just “deer in the headlights” at that point, just not really. If I think back, I don't really know what I was grasping. It was just kind of being present in the moment.

But also, like she said, just... Honoring what Sydney's wishes were during that season, but also learning how important that quality of life and that in each day, each moment, each second that you're going through that part of your life.

Tekeima (06:18) 
Thank you both. Seems that you were carrying a lot. And in the midst of that, I heard you say having a conversation with Sydney.

You know, there are times when honesty may feel like a gift and other times it feels like it's quite the burden, especially as you enter conversations about the end of life.

I imagine it may have been difficult to have completely honest conversations with Sydney about her care and what she wanted as her health declined.

What worries or fears did you have when talking with her about this?

Tasha (06:59) 
I was cautious to give her the truth always, but not always all of what had been shared with us. I made sure to filter what was necessary for her to know.

And for instance, if they gave us a prognosis where... They mentioned six to eight weeks, possibly. I didn't feel that was helpful for her to have a time frame, but it was helpful for her to know that the medication was no longer working.

The time frame was not correct. And I don't, I mean, I'm not saying they were wrong in their estimation, but nobody, nobody knows that number. Right? And so, it wouldn't have been helpful for her to know that in any shape or form at that time.

So, I told her the medication was no longer working when she asked if she would die. You know, that was that ongoing conversation of we all die one day and cancer may very well take your life. And I don't know if I'll leave this earth before you do. I don't know what that looks like for anybody, but we'll do all that we can medically to keep you comfortable and leave the rest in God's hands.

And she was able to get on board with that conversation and that way of thinking. And so that brought her peace. And so that's how we explained it to her at that time.

At different stages, we just weigh out what's the benefit of her knowing this full information right now. If it's something she needed input on, we would definitely share that with her.

Didn't feel necessary to tell her, hey, Sydney, you have terminal delirium right now, like in that season when that came closer to end of life. That wasn't a necessary conversation for her.

We just navigated each moment through that to keep her as… to feel comfort and peace and safe through that.

Dean (09:01) 
I think you did such a good job with Sydney with that because it was definitely… I noticed and I can remember any conversations we were having, she was looking at mom. And so she was definitely seeing the reactions from mom and everything.

And then kind of shifting gears, I'm thinking about my son, Carson, at that moment. And, you know, you just kind of forget a little bit, not on purpose.

But one thing that comes to mind is just right after that, when we decided to go home, I'm getting in my truck, driving, you know, 500 miles back to our hometown. And there's little Carson next to me. He sees dad pulling over, crying and just checking in on him.

You know, and so the conversations. So it was just a lot of different moving parts in this season, you know, of just, and, what a crazy, you know, conversation to have with your son, you know, in that moment.

Tasha (10:02) 
He was seven.

Dean (10:03) 
Yeah, seven at that time.

But he just, he was grasping it, you know, and I just, you doing okay? You know, and he'd just kind of look at me.

And, you know, we'd pull off and I'm like, you need something to eat? You know, kind of thing. We just, you know, it's a blur, which is kind of scary, you know, driving down the highway.

But, you know, but we just, powerful time with my son just, you know, he just is an old soul in that moment, just embracing that his parents are hurting.

Mike (10:33) 
What you guys have described is so important and so valuable and kind of what we see where even with training and practice and all of the work that goes into kind of what we try and do to help our health care professionals better articulate and communicate these things, it doesn't make it any easier.

And then imagining having it be your own child or your child's sibling. And I think that that's such an important element to understand in the fact that balancing what is needed and what is wanted.

And I think what you just described, Tasha, of having Sydney in some ways guide those conversations and kind of what she needed, what she wanted to hear, what's enough.

And I think we see that in the literature and in the evidence with regards to, you know, having those conversations and letting the child guide what they need and what they want and also kind of finding those ways to balance that with what the family needs.

Tasha (11:31) 
It's so multifaceted and layered and complicated. And what works one day doesn't necessarily work the next… whether that's medication or comfort or emotions or whatever you have to reorient yourself kind of every day to what is, what are we facing right now and deal with that.

But it's definitely the whole process is a learning curve.

And I know Dean keeps giving me, you know, props for like Tasha did great, she was amazing. But also just to have a husband who trusted me enough and didn't, you know, he understood like, okay, this is something that you feel more comfortable with and have more knowledge about or intuition or whatever that discernment piece is there.

And it has been a deal that we made in the beginning. And he's like, I'm not putting pressure on you. You can process those decisions with me, but I will never hold anything against you for any decision that you make because I know they're made with her best interest in mind.

Tekeima (12:43) 
It's a beautiful blessing to know that you two had the support of one another.

There are many times that, you know, parents just lean into the strengths that the other one has and also relies on the support of the care team.

The hope is that all patients and families will feel heard throughout their child's medical treatment. And still, even with the most compassionate and skilled care team, there may be moments when feeling heard doesn't happen as well as one expects.

Mike, what advice do you have for families who feel like their care team isn't hearing or honoring their hopes?

Mike (13:27) 
I think the biggest thing is just speaking up and speaking out, right?

We have a particular set of expertise and experiences based off of our medical training and what we see with the patients that we're caring for. But each patient is unique. Each family is unique. Each experience is unique.

For us to be able to understand what those needs are, we need to know what those needs are. And so, you know, trying to provide that empowerment to patients and families to say what they are hoping for, what they're wishing for, what they're worried about, because that can help guide us in some of these conversations, right?

This can help guide us in some of our decision-making with regards to the fact of the hope of spending that quality time with family versus the need to continue forward with therapy. And how does that balance with what we know about the diagnosis with what the family knows about their unit as a family, but also their child and what the child knows as well.

I think that's such an important point, especially as the child gets older is the opportunity—and especially for some of our adolescents—to really share what they're thinking, what they're feeling, what they're experiencing.

And so that for me is just, you know, don't be afraid to tell us what's going on in your mind and some of the challenges or worries that you have because that will help us to come together to take the experience and expertise that we each have to really work together as a team to achieve the best that we can to, as we mentioned earlier, to ensure that the child and the family has the best life that they can have and live the fullest life possible.

Tasha (15:05) 
I think I've heard you say as well, Mike, I think it was you, we'll give you credit for it (laughter), that you know medicine and the disease, but we know the person better.

So you're the expert in the medicine and we're the expert in the child.  

And when those two can work together well and form a partnership, that's the most ideal, especially in end of life, right? When medicine is important, but also there's a little wiggle room in how, you know, what's the best for each individual child.

And I think that was you. Did you say that? 

Mike (15:46) 
Maybe. I'll take it. I'll take it. (laughter) I think you're exactly right.

And when we look at a history of medicine and communication research, and by no means am I a communication research expert, right? And we have some awesome people here who are doing that, both here and around the world. 

But what I will say, right, you know, historically there was that very paternalistic, we are the doctors, we make the decisions. And then there was the shift appropriately so, you know, thinking about the ethical rationale for this. And it's like, no, we want to give the autonomy to the patient and the family.

And so, but that led to us like, well, here are your choices and we're just going to step back. But really it needs to come together into more of the shared decision-making where exactly what you said, we have a certain set of expertise and experiences and training. 

You all have the experience and training and understanding of their child and your family. And so when we can come together and not just use communication as a, as a means to share information, but to really build trust. To build those relationships, to really be able to work together to align with what those decisions are so that it truly is a shared process and not just where one group dominates over the other.

Tasha (16:54) 
That’s good.

Tekeima (16:56) 
And to each of your points, each child and family brings their own wisdom to the health care journey. And sometimes that wisdom leads to choices or desires that differ from the medical recommendations offered?

Were there times when you two and Sydney wanted something different than what the care team suggested? If so, how did you handle these situations?

Tasha (17:23) 
Yes, there were times that I would give a little pushback, just a little. And there was this mutual respect with our team. And so I was blessed and thankful and privileged to have that rapport with our team. And I really hope and pray that everyone has that experience with their team of physicians and clinicians and all of that.

But through that mutual respect, Sydney had a grand mal seizure shortly after we came home on hospice care. Our first hospice hadn't given us everything we needed. And so that's a little caveat. Yeah, I want to give just a little commercial here to you to let you know that you can fire your hospice team and you can do some research and ask for recommendations in the area of who might be a better fit for you. You can interview hospices to see what's the best fit.

And we didn't have a comfort pack. We were never given one. And so there were certain medications in that that would have helped keep Sydney comfortable, possibly calm down that seizure that we didn't have.

And so it also happened to be the day my mom came home from having her esophagus removed from stage three esophageal cancer. And we were at my mom's house and Sydney had this seizure.

And so all I knew to do, because I didn't have anything else and I couldn't get ahold of my hospice provider at the time, I called my pediatrician and I called 911 and I just told them she had a do not resuscitate order. We didn't want her intubated, but we wanted her to be bagged and whatever else needed to happen in that time.

After that period, once we got home and she woke up, which we didn't… asking for pancakes about 24 hours later… we didn't know if she was going to wake up or not.

And that was literally the first thing she said was, hi, mama, I would really like some pancakes. And so McDonald's pancakes it was that morning.

Our team recommended anti-seizure medication. And there was just something in me that… Sydney had a bucket list of sorts that involved riding a roller coaster. We were taking day trips into Chicago and doing different things. And I knew she would be more sedated and more tired and probably not have the energy to do that.

So through lots of conversation with our entire team, we were able to come up with another plan that involved me accessing her port. I had to learn how to do that. A surgical nurse friend of mine came over and taught me my sterile field. And Sydney thought it was great. She thought it was… she heckled me the whole time I was learning to do that and flush that out.

And then if she were to have a seizure, there were some medications we could administer one way to get her calmed down enough. And then I could access that port and give her the rest of her medications. And so our team came together and they were able to help support me in that.

That being said, Sydney never had another seizure. And she lived another almost five months seizure-free. And we were able to get a lot of life in and all of those things she wanted to do before she passed away. And so I was really thankful for the team.

And you know what? It would have been… if she had another seizure, maybe we would have had another conversation that was like, okay, she's had another seizure. Oh, she's had another one. Maybe there's another. Maybe it is time to have her on that medication scheduled on a regular basis.

But for us, that wasn't the case. And I feel like that pushback and that advocacy at that point was the right call for us.

On the other hand, if it was a different parent that didn't feel comfortable accessing their child's port, didn't feel maybe that they had the support of family that could pitch in and help, the right call would be to put them on the anti-seizure medication.

So it's a very unique and individual and personal decision. And that's why I was saying kind of in that end of, especially in that end-of-life space, it involves, you know, what am I capable of? And it doesn't make you a worse or a better parent. It just makes you the parent of that child and knowing your capabilities and what you're able to do at that time.

Dean (21:50) 
And it's also like I… just listening to you, just knowing that, God forbid we ever have to go through this again, how different I would be in that journey.

Because I typically probably would have been the person to go back and just listen to everything hospice said to me and go home and just do that. 

But there were so many things that were brought to my attention. I look back now, it's almost like not having a fire extinguisher, you know, when a fire started at your house. Like having those tools and just how much more stress I was adding to my life by not having that fire extinguisher in my life at that time.

And I know everybody's different, but I just think back of how many things that Tasha just questioned that I would not have even thought of. 

And I know every family is going to be different and stuff, but just having all the tools for everything that Sydney needed in that moment to give us peace of mind, I guess, at that moment. And a calm to enjoy each of those moments.

And I just, that's what I go back to is I remember, because Tasha had set up everything with quality of life and with hospice and just remembering like some of the things… the first one that the hospice we fired, like the things that they had asked me to do, I would have done it without questioning. 

And I'm just saying to people out there, question it. If it doesn't seem right, it's probably not right.

Tasha (23:15) 
Or if it's just not a good fit. It's not necessarily that it's wrong or bad, but it's not a good fit for you.

Dean (23:21) 
Right. Exactly. So there were just some things that were just like, you know, no, get an ambulance. 

Tasha (23:27) 
Oh, yeah. That was…

Dean (23:28) 
They wanted me to…

Tasha (23:29) 
They wanted us to transport her home and lay her in the backseat of his truck while she was on oxygen. And it was just like, we can't do that. 

Dean (23:37) 
Dad's a big guy. He can come pick her up. Yeah. It was just one of those things that's like, I shouldn't have had to do it, but I would have done it. Thank God Tasha was there going, no.

Tekeima (23:46) 
I was going to say, that's the beauty of this partnership. You know, you balance each other's thoughts out. You balance the plan out. And all with the interests of Sydney in mind.

The word that I think of when you talk about this experience is discernment. And the way you discern things day by day and moment by moment. And it reminds me of the mantra you shared in the first episode. I would love for you to share it. 

Tasha (24:21) 
Sure. Yeah. And I use it today for many other things.

As parents, we make the best decisions we know how to make with the information we have and understand at the time with our child's best interest in mind. And so we make decisions on what we know. And it's always with our child's best interest in mind. 

And Mike, I think we've chatted before about, you had said, you don't know, like on that side of it, you don't know what you don't know as far as what we're thinking. And we don't know what we don't know either. We don't even know what some of the possibilities are.

So sometimes when you just have conversations with us and ask if we have questions, we might not know there's a question to ask. So how do we navigate that?

Mike (25:13) 
Yeah. And again, I think that that's where building those relationships, having these conversations early and often are so important to know, not just again, all right, this is the diagnosis and this is the chemotherapy, this is the treatment plan, but rather, all right, this is Sydney who is a member of this family. They love to do this. They love to do that. You know, who she is as an individual, who you are as a family. 

Cause that then helps us kind of be able to have the relationship of trust to then be able to ask some more of those probing questions, to be able to think through some of these things about what are we hoping for? And obviously the big hope is survival and cure, and what else? 

Same thing with regards to worries. Yes, the big worry is not surviving the disease, and what else? That there's a lot of pain, that she's not able to engage and interact with our family, that we're not able to have those meaningful moments together. 

And to be able to be willing to ask some of these questions that at first people might not think are relevant to the clinical care, but absolutely are because we can then think through exactly what you just shared. 

You know, our family and what we're hoping for is meaningful time, awake and alert and interactive. And I worry that if we're using an anti-seizure medication, that's going to reduce some of that. 

And to be able to know that, to then be able to talk through some of that is important. And the same way for us to be able to say, you know, there are a couple of different options that might be available. These are the things that we think about with each of those options. 

And there are some things that... that aren't really choices because it's not really possible. You know, one of my mentors has always said, a choice is a choice only if it's a choice, which is a really roundabout way of saying there are some things that aren't really choices, right? That's not really an option, right? 

You know, as much as we would have hoped for a different outcome for Sydney, we knew what the diagnosis was and we knew what the prognosis was. So what could we do within that knowledge? 

And to also recognize, and one of the things that I love about being in medicine is it is an art and a science, right? That there are some scientific things that we know work in these different ways, but I love that art component to it. 

The recognition of that opportunity to really balance these things and the nuance, balancing that with the relationship and the humanistic component of we're not just treating an organ system or a pathologic diagnosis, we're humans taking care of other human beings. 

And that dynamic of being able to work together in that space is so important. And where those relationships of trust and taking that time to really understand so that we can talk through some of those things. 

Tasha (27:54) 
I worked in hospice care for about five years. And one of the things that really was one of my goals to communicate to others is that a spirit continues to grow even while a body is dying. 

And so if we can pour into the spirit of a person and that might be, what does a good day look like to you? What fills you up on the inside? That continues to grow. 

And the way I like to think of it is Sydney's spirit continued to grow until her body could no longer contain that spirit, and she was set free from it. 

And so, what is that good day? Is that family? For some people, it might just be having family around. Some people, it might be pain-free, comfortable, watching my favorite movie. 

Some kids, it might be going and riding your first roller coaster. So... It's those, what are those good days for your child and your family and how can we help you accomplish that if possible? 

Mike (28:56) 
And some of it might be continuing with chemotherapy, continuing with treatment, continuing with these different things. And so I completely agree. 

One of the things that you brought up, Tasha, that I think is really important is the community that you had. And you talked about how that support was so essential. 

And there are so many of us who want to help both professionally, but also personally with… you know, we all have experiences with family, friends, or loved ones who are going through these challenges, but it can be really difficult to know where to start and how to get involved. 

And so, what advice would you and Dean have with regards to if there are family members or friends who see family members or loved ones who are going through these different circumstances and situations? How can they chip in? How can they help out? And how can they ask? 

Tasha (29:45) 
One thing I think is, be a presence. Don't ghost them, even though you don't know what to say or do. I would rather you say something that is the quote unquote “wrong” thing to say than to say nothing at all.  

And so, I have learned and I appreciated… this is what I do for friends now when I know there's been a loss or there's a, you know, health situation or something going on in their life, I text and I say, no need to reply. Just letting you know I'm here. I love you. Reach out anytime. Because sometimes if you're being inundated by texts and you're thinking, Oh, I need to answer everybody, you know, no need to reply. I'm thinking of you. This isn't about me. 

One thing you could do as well is maybe if it's someone that's trusted by your family, you know, you know them well as they could take the child, the sibling and get them out from that like situation where they're not just surrounded by the death and dying of things, but can go out and do something that's just them centered. 

Gift cards are great. We had a local florist that sent Sydney a different flower arrangement every week. And it was something she absolutely looked forward to every time. 

Our church was a huge support, pastors. And people dropping meals off. We had one sweet lady. I don't know if I told you this, but we had one sweet lady who was kind of known to keep things a little long in her fridge. And she would come bring us food. 

And one time she brought lasagna and we all trusted it. And everyone who ate one lasagna was fine and everyone who ate the other one was not fine. And so after that, she was adamant. We're like, oh, no, you don't need to. She was adamant to bring it every single time. 

And so she would bring it and we would tell her thank you. And then the second team of food would come in after that and we would eat the second, you know, the next person who came in. So we would thank her and appreciate it. And then we just… because it was the blessing for her. And she's in heaven now, so she won't hear this podcast, but it was not denying her the blessing. She just wanted to be able to help. 

And so little things like that, bringing toiletries to the house, extra napkins and paper towels and toilet paper, things when you have family coming in. There are all kinds of ways to get creative. And now with DoorDash and all the things, you can just have food delivered. 

We had a gatekeeper. My sister was the gatekeeper. And so, communication all went through her. And she would just… that way I didn't feel bad having to say we're not up for guests. 

We had a sign on the door that said, text Tabitha before you ring the doorbell. And I mean, we got pretty specific about the amount of care that we had around us, and people were really respectful with that. 

Dean (32:41) 
I think it's just, a couple things that she said, but it's just, what a blessing to have text and social media and stuff like that nowadays. 

But that was one thing… I realized I had a couple of guys that said those words. They would text me and just go, No need to reply. 

And there was just, I don't know, I use that so much now with a lot of the guys I know that are going through the journey or lost children as well. And it's just basically, you know, you don't have to… 

It's just a response saying, We're thinking of you. I'm here. And so that was a big part. Or, hey, We left some gift cards in your mailbox, you know, and things like that. Like Tasha was saying, we were so blessed. But there's so many things you can do. 

And like she said, just don't disappear. That's, I mean, we had so many people that just, I think that's the common question now, you know, I don't know how. I don't want to hurt their feelings. 

I don't want to, you know—just reach out in that way and listen. They need support. They need love. You know, we needed that and definitely felt that in our community. So. 

Tasha (33:50) 
To quote our friend, Dr. Justin Baker on the term compassion, which the Latin root words are com and pati, which means to suffer with. 

Suffer with them, whatever that looks like. If that looks like you just sit there with them in a difficult time and you don't have the perfect words. 

And it's okay to say, I don't have anything that's going to fix this situation. I can't say anything to wrap this up in a pretty bow and make it all make sense for you. I can't make it go away, but I'll go through it with you. 

And there were people that did that with us. And don't get offended if I don't answer your text. Right, yeah. 

Tekeima (34:35) 
I really appreciate the way each of you have shared this idea of being present to the journey, people being present with you. 

There's a quote of Ram Dass that says, We're all walking each other home. And when we truly live into the essence of that saying and realize that none of us knows when the time will be, but when we make our presence known on the journey… Journeying through life with people increases strength, it increases resilience, it increases hope. 

And to know that you have people to do that for you. And not only people to do that for you, but that emerged as a result of you being able to have the conversations about your needs, about what you did need, about setting boundaries. 

I just feel that this conversation can be so empowering and liberating for those who are listening and are going through a similar thing. 

So I appreciate you sharing that feedback. And also I wonder, if there was one thing that you wanted to leave with families that are facing similar situations, what would that item be? Or what would that advice be? 

Dean (36:09) 
I can... I can say that you just never know how you're going to feel. 

And my main thing is my heart is so with, I know there's a lot of single parents that go through this, but, you know, just in a marriage, my heart has been for these couples, you know, that you can't point the finger and keep arguing over it in the season after they had passed everything. 

Because you're empty, you know, and you're expecting something from another empty person and you're not going to fill that void, you know. 

And so I am truly a product of, after Sydney passed, of getting counseling, going to… listening to the advice that was given to me and not just going, I got it. I got it. Typical male thing. 

And just, I listened to my wife. And we had our hard times. I mean, definitely it was a struggle. 

Tasha (37:11) 
When you were like, Oh, wow, what a great team you make. I was like, eh. 

Tekeima (37:15) 
Well, teams have challenges. 

Dean (37:18) 
Yes.

So, I mean, that's probably the biggest thing that comes to mind is just in the journey, you know, as you're just… make sure you're feeding yourself, you know, physically, spiritually, mentally. You're able to get… within reason, I mean. I know it's hard to... You know you can't disappear and just take care of yourself. There's a lot of moving parts with this, but there's also ways to just… 

I mean, I run, you know, I found out, I never dreamed in the season I’d be running around a campus in a hospital, but that was what brought me clarity to be able to come home and go, What are we doing today? So that would be my advice.

Tasha (37:60) 
I think taking each day as it comes in each moment as it comes and being as present as possible.

And whenever — it’s not one thing, right? You said one thing, but and I said and (laughter) — but being as present as possible and also knowing that you can't be all things to all people at all times.

And so you can just show up at whatever percent you have that day. And that's the best you can do.

And maybe tomorrow you'll have energy to do a little more or think a different way or have a little more clarity. Give yourself grace. Yeah.

And don't think too far ahead. There's this fine line about needing to be aware of what possible next phase of end-of-life might be. You've got to be aware of symptoms, you know, things that you can do to keep your child as comfortable as possible.

But not going too far down that road, trying to be as present as possible. And it's a muscle that you have to work in that process.

Yeah, I wish I had something more profound, but I think that's it.

Tekeima (39:17) 
I think the truth is always profound, and it lands where it needs to land for people who need to hear it.

I'm very grateful that you both talk about grace. And the fact that there's this imperfection, you know, I don't know where we get this idea that we need to be perfect in all things.

We need to respond perfectly. We need to live perfectly. We need to do all of these things with no mistakes or no stumbles. It is so unrealistic, especially when you're carrying such a heavy load, especially when you're faced with such great challenges.

And to see the way that you two did continue to work together, not that it was perfect (laughter), but the way that you continue to work together and the way that you invited others on the journey and allowed them space, you did that all within your own capacity.

And I think it's helpful for listeners to hear your story and know that they can live within their capacity and not try to stretch beyond that. Because the energies and strengths they need should be reserved for their children, should be reserved for their partner.

So thank you both for sharing all that you've shared today. And before this conversation comes to an end, Mike, I want to ask you if there's anything you would like to add.

Mike (40:52) 
I mean, goodness gracious, this has been remarkable and there's just so much to unpack here. And I think… both from what both you and Tasha and Dean have shared with regards to how to work together in these situations, understanding that each grief journey is different and how you take care of yourselves to then take care of each other.

Dean, we've talked about this a lot about what it means to be a man and what it means to be a husband and a father and how you navigate these journeys and your willingness and openness to share about the need for counseling, the need to seek that help.

And that's a strength, right? That’s not a sign of weakness, but that shows strength.

There's just so much to unpack there. And I hope that there are many more episodes of this to be able to tackle some of those things.

But the one thing I do want to kind of talk a little bit about that kind of came up at the beginning is, is this conversation with the children themselves.

And, you know, again, I just applaud both of you in the way that you navigated this with both Sydney and Carson, because it's something that comes up to us a lot.

And from health care professionals as well as like, please don't tell our children, please don't tell them that they're dying. Please don't tell them that they even have cancer. Right.

And I have the privilege of being able to work and teach in different parts around the world. And what has been interesting about this is the realization that that's not unique to the United States.

It's not unique to one particular culture or country. This is a global challenge of how do you talk with children about difficult subjects, especially when it's their own mortality.

And there have been a couple of things that I've learned in that process. And one is the fact that we have seen that when these things are hidden or not discussed, that causes increased anxiety and depression and regret amongst both the patients and the families, right?

There are increased challenges amongst the patients themselves when they see the adults talking and not talking with them, especially as you get older.

And as you talked about Tasha, once they, you know, that developmentally appropriate age matters.

The second thing though, often when families talk and ask, hey, please don't tell my child. You know, the first thing I ask is, well, tell me more. What are some of your concerns?

And often it is just, I don't know how to talk with them about this. I don't know how to discuss this.

And so that's where we can kind of talk with them and say, that's where we're here to help. And we have incredible resources in child life. Or psychology or social work, where they have expertise on how to be able to articulate this and communicate this in a manner that is developmentally appropriate. And either be with you as you talk through this with them or coach you through that.

The second element that I think is important, not just from the literature itself, but just in our own practice is, and we talked about this quite a bit, is the importance of trust.

Trust both between the child and the family and the parents, but then also with the health care team and that we are a team in that. And so, making sure that we always maintain that trust.

But then most importantly, and the thing that I probably use the most often is when talking with these parents or family members and saying, man, your child is really, really smart.

And I've yet to have a parent say, no, my kid's not that smart. Universally, they're the smartest. Our kids are the smartest, they're the brightest, they're the most attractive, they're geniuses. They're going to solve all of our world’s problems, right?

And so that's where it's like, your child is really, really smart.

Dean (44:20) 
That's great.

Mike (44:21) 
I see how smart they are. And I bet you they know what's going on. I bet you she knows what's happening. And she's probably really scared because she sees all of us talking, but not talking to her.

And same thing with Carson, right? He knew what was going on. And to be able to see that intelligence, that brightness, that understanding. 

And how we can then work with them and give them the information that they need to process what they're going through and still have that compassion and honesty because we do see how important that is.

And so I think, there’s so much more to unpack, but really the takeaway is just the importance of trust, the importance of working together as a team and really helping each other to help each other.  

And knowing how valuable it is to be open and honest about what we need and how we can work together.

Tasha (45:11) 
And sometimes it's as simple as asking your child what they know.

Mike (45:14) 
Yep.

Tasha (45:15) 
What do you know and understand about this situation? And that leads to the conversation that needs to happen. Usually they know more than we do.

Mike (45:24) 
They know a lot more than we think, yeah.

Tekeima (45:28) 
Thank you, Mike. The way you thoughtfully connected with this experience has truly been a gift.

And Tasha and Dean, the way you opened your hearts not only honors Sydney's life, but extends an offering of compassion, strength, and even hope to those who are listening today. 

We are truly grateful for the vulnerability and courage of each of you.

And for everyone listening, you are valued. We appreciate you joining and holding space with us today. And we hope that something you heard helps you feel accompanied by the Caregivers SHARE community on your journey. 

Until next time, take care.

Narrator (46:15) 
Thank you for listening to Caregivers SHARE, a podcast lovingly brought to you by Patient Family-Centered Care and Psychosocial Services at St. Jude Children’s Research Hospital. Please subscribe, leave a comment, and share this podcast with others who may benefit from this support. Visit stjude.org/caregivers-share for show notes and educational links related to each episode.  

This podcast is for informational purposes only and does not render medical advice or professional services. This podcast does not establish a patient relationship between the listener and St. Jude Children's Research Hospital. The opinions expressed belong to the caregivers. Your personal experience may differ. If you have questions about individual health concerns, psychosocial needs, or specific treatment options, please discuss them with your child's medical team.      

Accuracy and availability of Caregivers SHARE, a St. Jude podcast transcripts may vary. Transcript text may be revised to correct errors or match updates to audio. Audio on stjude.org may be edited after its original publication. The authoritative record of Caregivers SHARE, a St. Jude podcast episode content is the audio record.   

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Season 3 Episodes